A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

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Mid-Air Without a Net

The past two months have been a struggle. I’ve alluded in the school-themed posts: disruptive silliness in class, lack of social enjoyment/awareness, moodiness. Most worrisome, Martin came off the school bus one day sad. I mean, he seemed really just sad. When I asked for details, he said he was “getting tired” of running at school and of riding the bus. He asked me to pick him up at school the next day. Out of concern for him, I rearranged my schedule and picked him up at school the next day, so he wouldn’t have to take the bus.

One benefit of keeping this blog, for me, is access to real-time impressions of Martin’s conduct. I checked my July and August posts to remember how he was doing.

In August, we ramped the anti-Lyme measures even more. Martin went on the comparatively powerful A-Bart™. Powerful. Not pharmaceutical. In the first weeks on A-Bart, we were in Costa Rica, and Martin flourished. Thereafter, his behavior started to slide. He started school a solid “decent,” whence he slipped to “distracted” and then “discombobulated.” His behavioral lapses looked like die-off-related ROOS. He had bathroom emergencies, i.e., sudden need to pee. I had to cut off his access to Disney Junior; he was so concerned with watching Mickey Mouse Clubhouse that he melted down if the channel guide listed an episode he hadn’t memorized, and he perseverated constantly on the show. (He’s eight. Mickey’s Damn Clubhouse is aimed at pre-schoolers.)

“Are you kidding me—is he on train lines again?” Adrian asked, when Martin, Mickey-less, switched to perseverating instead on New York City subway lines. “That’s like behavior we haven’t seen since kindergarten.”

Before the call, I held a sort of pre-game with my friend Stacey, another biomed parent. It looks like die-off, I told her, and I’ve got to find a way to right the ship. When Martin was in self-contained special education, I could weather these seasonal dips—two steps forward, one flop onto your backside, that’s the whipsaw of recovery—because his school specialized in addressing behaviors: Martin’s a little off his game. Deal with it. But now he’s in general education, in our local public school. They don’t want to deal with behavioral setbacks. They’ll kick him out. (I fear.) And then where will we be? We’ve already held him back in second grade to make the transition to general education. I can’t return him to second-grade special education, and he will have missed too much of this year to be in third grade.

“So what’s your plan?” Stacey asked.

I think I’m going to tell Dr. C that we need to come off all the bartonella remedies, I said, at least until our December visit to her office.

Stacey said: “Let me ask you this: What if you take him off everything, and he does better? What will you do, leave him off his remedies?”

I think he will do better off his bartonella remedies. That’s why I want to do it, to halt the die-off. I wouldn’t eliminate the remedies forever, though. Bartonella is still an issue, as the die-off shows. No more remedies might return him to “baseline,” but there probably wouldn’t be more progress.

That was my pre-game: to explore taking Martin off bartonella fighters, temporarily.

Dr. C agreed die-off was at issue, and took Martin off A-Bart and CXVRM3-Micro, increased his support remedies like enula, and added pau d’arco to help with stress.

Martin’s bathroom emergencies stopped overnight. His behavior, on the other hand, held steady for a few days then declined further still. He became anxious. “Mommy, are you angry?” he asked, constantly. That’s something I say to him occasionally, when he’s not grasping my cues: “I am angry,” as in, “Martin, bunny-hopping down the hall an hour after bedtime is not funny. I am angry.” Now my occasional anger morphed into a boogeyman lurking behind every interaction. “Martin, stop playing iPad and come to dinner.” “Are you angry? Mommy, are you angry at me?” “Get back in bed, Martin.” “Mommy, did you get angry? Are you still angry?” “How was school, Martin?” “Are you angry, Mommy?” Meanwhile, the perseveration rocketed to that level where Martin is physically unable to stop speaking. When we attended a weekend play date with his former classmates from self-contained special education, Martin didn’t look like the kid who’d transitioned to general education. He looked like the least engaged kid of the bunch.

I scheduled another call with Dr. C, on a Wednesday evening.

Nadir

That Wednesday, we hit a low point. Martin, who loves (but doesn’t always read) books, was excited for the book fair at school. Two days earlier, I’d helped set up the book fair and seen plenty that would catch Martin’s eye: colorful softcovers, cartoon-character pencils, big erasers, silly pointers. On Wednesday morning, I sent a signed, blank check and, to facilitate my own accounting, I scrawled “for books” on the check’s description line.

Apparently, whoever helped Martin at the book fair interpreted the “for books” descriptor to mean Martin could select only books—no pencils, erasers, bookmarks, pointers, gadgets, or toys. So while Martin’s classmates gleefully (I’m picturing this in my head) attacked the goodies, Martin was limited to books. According to the teacher’s later description, this circumstance sent Martin, who was already having a bad day, into a tailspin from which he was not able to recover.

The school has my mobile phone number. Would that someone had called me to ask whether Martin could buy only books. Argh.

Martin was with his nanny, Samara, after school that day, because Adrian was in South America and I had to work. I arrived home at 5:50 pm, to accommodate a 6:00 pm call with Dr. C. As soon as I entered the house, Martin began to cry. “Why did you say I could only buy books?” he asked, tears rolling. “Why wasn’t it okay for me to buy toys?” I needed a minute to surmise what had happened, and then realized it must have been what I wrote on the check. I brought Martin to the sofa, cuddled him on my lap, apologized, assured him I hadn’t meant to say he could buy only books, promised him a weekend trip to the toy store. I consoled him as best I could, then had to leave him, still sniffling, with Samara while I took the call with Dr. C.

That moment, Wednesday, 6:00 pm, was rock bottom.

“I can hear the frustration in your voice,” Dr. C said as I described the past two weeks: the perseveration, the constant questions about whether I was angry, the emotional instability.

I know we have ups and downs, I told her. I know that with progress come setbacks. But he’s in general education now. We have no safety net.

Dr. C was reassuring. Bartonella manifests in anxiety and compulsive behaviors. The A-Bart had been too strong a remedy, and Martin couldn’t handle the die-off. But plainly he needs something to keep the bartonella in check.

We agreed to add Active H2 and pantethine to help Martin’s current state, and to put him back on the MC-Bar II and Des-Bio bartonella kit that he’d tolerated well in the spring.

I felt better, like at least we knew what was going on.

After the call with Dr. C, Martin’s behaviorist came over. Darlene, the behaviorist, sees Martin at school and at home, and we had arranged this meeting the week before. I told her about Martin’s book-fair meltdown, about how poorly everything had been going, about the bartonella treatment, about my worries that he the school could seek his removal.

Like Dr. C, Darlene was reassuring. “You need to know,” she said, “that Martin is not the behavior problem in his classroom. There are kids with more behavior issues, and whose parents aren’t interested in doing anything about it.”

“Really?” I asked

“Yes.”

“What I need to hear is that the teacher and the aide like Martin—that they still want him in the class, and support him being there.”

“The teacher loves Martin. And the aide thanked me for recommending her to work with Martin.”

With that, I felt better still, like at least we weren’t on the verge of being kicked out of school. Darlene reviewed a new playground participation plan she’d been working on. She also recommended that I write a note to Martin’s teacher letting her know about the bartonella flare, and that we were taking action on that front.

Typically, I shy from discussing anything we do biomedically with a mainstream audience, lest we appear radical or weird. On this occasion, however, I felt that an explanation could buy some extra patience for Martin. As soon as Darlene left and Martin was asleep, I sat at the kitchen table and handwrote a two-page note to Martin’s teacher.

Reemergence, Nope

Meanwhile, I had to order the new remedies that Dr. C and I had agreed upon, and I hoped they would arrive on Friday. They didn’t. In an unfortunate coincidence, I had a concert to attend Friday night, and Saturday morning I left before dawn to retrieve a classmate from JFK airport and attend a luncheon at my law school. Adrian was still in South America, on family business, so Martin spent Thursday evening (when I work), Friday evening, and most of Saturday with Samara, whose text messages described abysmal behavior.

The taekwondo teacher wants to talk to you, she texted Saturday morning. He’s wondering if Martin is taking any drugs for his ADD.

Oh no! I texted back. (More on that in a later post.)

Sunday, after church—“He told me all about the presidents, like wow! He knows all about the presidents,” the Sunday school teacher reported—I took Martin to the City for a play date. He wanted to spend the afternoon riding subway after subway. His playmate, who is also currently fixated on train lines, was more than happy to oblige, so we rode subways all afternoon. On the way home, Martin had a meltdown. I don’t even remember why. I just remember the meltdown.

Monday evening, the new finally remedies arrived. I started Martin on the Active H2 and pantethine immediately, and Wednesday morning I added MC-Bar II, beginning with only two drops and working up from there. Wednesday, something went right. Around lunchtime, I received this email from his teacher:

Just wanted to write a quick email to say that Martin is having the BEST DAY! He is working cooperatively with his classmates on a math enrichment, took initiative to organize who was going to bring out the recess equipment, followed a web quest on the computer without any help, and followed every other direction given today with little or no prompting! We are very proud of him and wanted to let you know.

Was it a miraculous transformation? I wish. Thursday and Friday Martin was foggy again, and our weekend included another trip to ride MTA subways to and fro, and another meltdown. In fact, several meltdowns.

Breathing Deeply

By now a month has passed since we implemented the changes (have you noticed I haven’t been posting much?), and I regret to report that the situation has improved only marginally. The week before Thanksgiving, we had a pre-scheduled meeting with Martin’s school team, to discuss how his transition to a general-education classroom has been going. The teacher reported that Martin is having meltdowns about three times a week, whereas in September he had none.

Nevertheless, no one suggested that Martin doesn’t belong in the general-education classroom. Those present, in addition to the classroom teacher, included the speech therapist, OT, PT, resource room teacher, and school psychologist. The table was quite full.

At home, our family is being held hostage by Martin’s obsession with NYC trains/landmarks combined with his emotional fragility. His is constantly demanding to see my calendar and know whether we have any trips to the City planned, and if so, he wants to dictate which trains we will take and where. He becomes agitated and upset if his wishes aren’t met. Over Thanksgiving break, I planned a trip for us and four visiting relatives to a Manhattan Bierhall, to appease Martin. The logistics involved Martin traveling by train with one of my brothers, while I drove with another brother’s suitcases, because he was returning home that day. Martin got to eat a treat meal with potatoes and sausages. His response to our efforts? He melted down because he wanted to “ride subways and do something else in the City.”

I’ve been bouncing Martin’s enula and MC-Bar II doses, experimenting to see whether one of those remedies could be causing adverse effects. No luck.

This week I spoke again with Dr. C. I feel like I’ve morphed from the confident patient into the needy parent. We are not sure whether bartonella is at fault, or whether another culprit could be at work, such as mold in his new school. (Recall that much of the spiral has occurred, and intensified, upon his beginning school.) Dr. C advised that I try zeolite and CBD oil to control the situation until Martin’s appointment next week in her California office.

Readers, this is a trying time.

Still, I do have a silver lining: Martin is sleeping well. Which means I am sleeping well. Which means I can handle almost anything.

9 thoughts on “Mid-Air Without a Net”

My heart goes out to you, the dedication you put is inspiring.
We also seem to be dealing with Lyme. Biomagnetism therapy addresses viruses swiftly and gently so its been helpful in tempering the die off from the lyme biomeds. Its a more recent therapy but more info is becoming available. Dr Rau, his position on Lyme is that vaccines are a lyme cofactor. In his study, in a farm area in Switzerland where many were infected with lyme, but most healed on their own and those who didn’t were infected with viruses. Our kids are virus kids, so the lyme seems to manifest. Dr. Klinghart, also a lyme specialist, insists on removing emotional traumas before dealing with pathogens/lyme, as the body won’t release the pathogens effectively. Emotional code, although it sounded ridiculous, was a real help, it calmed everything down. Its a maze….

Thank you for your posts. It is a long journey and I am thankful to know I am not alone! I wanted to ask how the CBD oil worked for anxiety. My son’s ND is suggesting CBD 1200 ($200) and I was hoping to get a review of the CBD oil you were using (if in fact you were using it for Martin as per the advice in this post) and the brand. I understand there is no THC in the oil and that it also can combat inflammation. TIA

To be honest, I haven’t noticed a huge difference from CBD. Right now we are using CBD+ brand capsules. In the past, we’ve also used oil from HempMeds, which I found expensive. It seems to vary a lot from kid to kid, based on individual issues. For example, this week I had dinner with a friend whose son has challenges including epilepsy. She said that medical marijuana (the type with prescription, as opposed to the more easily available types I just discussed) has decreased her son’s seizure activity by 80% in just the first few weeks they’ve been using it. If your son’s ND trusts the CBD 1200 brand, I would try that (buy as little as possible the first time around!) and see if you perceive a difference.